Ah I know some with Parkinson's too...

Interview Health Care Magazine

parkinsons real life storiesThank you, Zorgvisie Magazine, for the interview
(Dutch Health Care Management Magazine)

Mariette Robijn: ‘healthcare providers, be careful what you say’
Three years ago, Mariette Robijn (now 49) received her Parkinson’s diagnosis. In hindsight, and like so many other Parkinson patients, she realised that she’d probably been suffering from the disease for a number of years. ‘I felt that something wasn’t quite right with my right hand and foot movements’. “Nothing to worry about”, said the GP. And I believed him, because I never got sick. But I still wanted to see a specialist, just to be on the safe side. The neurologist knew that something was wrong within five minutes. He referred me to the radiologist for scans. Three weeks later I got my results. On a good day it barely affects me. But on a bad day, I fare less well. Luckily I’m my own boss – my husband and I run our own business – and I can determine my working hours myself.

I’m an assertive patient. I’m critical and take the initiative. But as a patient, you need to listen to your specialist too. They’ve trained for it and have the requisite medical knowledge. I see my neurologist four times a year. For around two hours in total. He uses the consultation to establish exactly how I’m doing. Hats off to him, he deduces this with lightening speed – from the manner in which I enter the room, the way I move, sit and talk. I always thoroughly prepare myself before an appointment. I take ownership of the problem. My husband and I carefully review the notes from the previous session before each visit. He always comes with me and, if I avoid raising a tricky topic, he gently reminds me.’

Robijn does have a tip for healthcare providers: they should be a bit more careful about what they say. ‘They’re not always aware of the huge impact that their casual remarks about the disease, often veiled in a sub clause, can have. “Whilst this, fortunately, doesn’t affect you now, you will experience lung problems or become bedridden later on”. Or “Your cognitive skills will steadily decline”. These types of remarks haunt me. I don’t like hearing that I’m only going to get worse. Saying the right thing to a patient at the right time appears to be a challenge for healthcare providers. It’s also important to determine the most appropriate treatment together. Yoga lessons weren’t for me. I do my own physical exercises and train under medical supervision: mountain bike cycling and running. If you do what you enjoy, then you’re much more likely to stick to your regimen and your chance of success will be far greater. At the end of the day, you’re the one who has to get on with it.’

NL article: Bart Kiers, Zorgvisie Magazine
NL-EN translation: Lesley Gunn

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